The Haemophilia Society, alongside campaigners, has written to the Prime Minister calling for a public inquiry into Government and NHS negligence during the Contaminated Blood Scandal in the 1970s and 1980s which led to the deaths of over 2,000 people and thousands more infected with HIV and Hepatitis B & C and other blood-borne viruses, after being treated with contaminated blood products.

The letter, addressed to Theresa May, describes the anger felt by many at the failure of the Government to address the tragedy, highlighting the government’s ongoing assertion that no mistakes were made at the time.

The Haemophilia Society is demanding that the Government open a ‘full UK wide public inquiry’, which has never previously occurred and which will compel witnesses under oath, release all documents for public scrutiny and have a remit to consider failures in government policy and negligence by public bodies.

Further to this, there is a call for compensation to be made available for people affected by the scandal, which has been dubbed as ‘the worst treatment disaster in the history of the NHS’.

Liz Carroll, Chief Executive of the Haemophilia Society, said, “This issue still devastates our community. A generation of people with haemophilia and other bleeding disorders were infected with blood-borne viruses and many lost their lives. The extent of the scandal was avoidable if action had been taken over known risks and the government had pursued their policy of self-sufficiency. Those infected and their families deserve truth, justice and compensation”.

The letter received over 500 signatures from the families and friends of those affected as well as 8 different campaign groups representing this community.

The Haemophilia Society is asking supporters to tweet supporting the call to reveal the #bleedingtruth.

In the 1970s and 1980s over 4,500 people with haemophilia and other bleeding disorders were multiply-infected with HIV, Hepatitis B and C and a range of other blood-borne viruses. Over 2,000 people have since died and of the 1,200 people infected with HIV less than 250 are still alive.

People with bleeding disorders lack a protein, most commonly factor 8, factor 9 or von Willebrand factor, that enables their blood to clot. This mean that even minor injuries can lead to difficult to treat bleeds, particularly into joints which, over time, leads to joint damage. Treatment requires regular replacement of the missing protein by intravenous injection.

In the 1970s treatment of haemophilia and other bleeding disorders with fresh-frozen plasma and cryoprecipitate that contained the missing proteins was replaced with a new product, factor concentrate. Factor concentrates, such as factor 8 for treatment of haemophilia A, were a revolutionary new treatment allowing patients for the first time to be treatment prophylactically, that is prior to a bleed, to reduce the likelihood of bleed and the resulting joint damage.

These new treatments, however, were produced using a process which involved pooling human blood plasma from up to 40,000 donors and concentrating it to extract the required factor. Blood products were known to transfer viruses such as Hepatitis and this risks was vastly increased when they were pooled using the new techniques. This risk was further exacerbated when supplies of UK produced factor concentrates were not sufficient to cope with NHS demand, and products were increasingly imported from the United States. In the US, high-risk paid donors were used as well as being collected in prisons increasing the risk of contamination with blood-borne viruses.

These risks were ignored by leading clinicians and Government who then failed to take appropriate action to end their use and return to safer products. Pharmaceutical companies and leading clinicians did not appropriately share, or even hid, information about risks from patients and patient groups. Many people were infected with deadly viruses during this time.

By 1984, heat-treated product that could inactivate viruses had started to become available, this combined with improvements in donor vetting meant that by the end of 1985 all UK patients were receiving safer treatment although some risks remained. Only in the late 90s did use of synthetic (known as recombinant) clotting factors start to become widespread in the UK effectively eliminating the risks from viruses and other contaminants.

During this time, patients were tested for viruses without permission and not told their results until years later. Some, as a result, were denied appropriate treatment and in some cases infected their partners and other family members.

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8 Comments

Mrs vickie watson9 months ago10th May 2017

A full open enquiry where the results are released to the public as well for full disclosure then the government may start to claim some credibility back. However for the victims and the families of the victims ( R.I.P. Uncle Peter) it will all be and will always be too little too late.

I was one of the first to give my son home infusion and my mum I was taught by the hospital to make there lives Easyer less pain and less time in wheelchairs I beleaved in the goverment trusted them all along with many others had no idea we was slowly killing our loved ones not just with factor 8 but also with AZT also given out by the health service we need to known who gave the order to kill our loved one and brain wash us all into thinking we was helping our love ones we need justice we have waited long enough and don’t understand what right they had to murder all those people and sentence so many others to death through no fault of there own they are dying in poverty worrying how there love ones will survive not just with there death but the fact they will be left in poverty most have already lost there jobs and there homes and felt the full force of people’s ignorance and took the abuse we lived with all for many yrs back in the 80 before people was educated even now there is still a stigma Justice is well over due we will never give up Margaret madden junior. RIP my son Daniel my mum Margaret and my cousin Ronald love and miss u always xxxx

I lost my only brother in 1989 he was only 28 just shortly after we lost our mother, it’s sad that my son has never met his uncle, I feel robbed, for the promising Career Andrew had, he coped well with the treatment, and would be here today if the government at the time to make sure the factor 8 was fit to use instead he ended up playing Russian roulette wondering which dose would be contaminated x

My mum died in November 1984. We were told prior to her death that she would need a 2nd transfusion due to the 1st transfusion in their words being “bad blood”.
Can anyone advise me how I can get my mum’s details included on the list for this enquiry?

My only son died in 2006 he was a haemophiliac and was infected with both hiv & hepatitis through factor v111. My x husband has died without seeing any justice, apology or even recognition that the government did wrong. I miss my son desperately & still feel pain and anger at his needless loss.